Christmas plus questions

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Ann Ireland
Veteran Member

Date Joined Apr 2006
Total Posts : 511
   Posted 12/27/2007 1:13 AM (GMT -6)   
Twin and I decamped to a hotel for the past four days and return to my flat today. It has been THE VERY BEST XMAS EVER! I have never stayed in a hotel! But we did not have a dysfunctional xmas with all the family nor the high the demands to be 'proper', as set rules do exist.
I went to dinner in my slippers, lay on the lounge sofas in my bare feet (will explain) and swam in the pool and sat in the jacuzzi with three fat men!!!!
I had to go back to flat to feed dogs and take em back to hotel where we walked em round the hills and brought them back at night.
Yesterday I went to the sales and bought a three seater leather cream sofa and a two seater so VERY pleased. That was fun as we were up at 6am and back at hotel for breakie.
But not the hard part.
Outa hospital since thurs. Muscle biopsy showed that the cytocrome oxidase was that usually found in a much older person, say 10 or more years older and the pathologist actually rang and tole me that it was very unusual in a person just gone 55, it would explain the exhaustion and I was to bumf up all the vit B's, when I told him I was in a wheelchair he just said "oh crap" which I thought funny, and in fact the fact he rang and treated me decently had me on cloud nine for days after all the crap I have been through with doctors, as mentioned in other posts here on this site.
I rang a friend whose daughter is a scholar doing her biochem doctorate on brain pathology and she said this enzynme result would indicate that the muscle cells are dying and would explain the tiredness and the muscle wasting and weakness I am having.
I also now think I have full blown sjogrens, I am so DRY, tears, hands, skin cracked tongue, mouth etc.
I am now waiting to go to London to the Louise Coote Unit in London where i do hope that they will treat me as a human being and not like a nutcase.
I have been in Pain +++ this christmas though, my hands are bright red and so are my feet and I have been holding ice to them c onstantly in the hope to calm the fierce burning sensation in both, it also effects my knees and back of calves and sometimes even runs up the back of thighs.
Does anyone know what this might be related to or even point me in a direction of where to 'google' to discover what it all may be.
I am also very very hot all the time, like having a fever, still no answers.
But folks even though I am sitting on my bed with twin asleep in the other, even though my head is lifting off with the buzzing and tinnitus and I am knackered (exhausted), shattered in pain, I am very, very happy. I cannot express what a bloody fantastic few days we had, we even had a room with a balcony looking over the harbour and the dublin mountains.
I WAS in the wheelchair mostly but I just didnt seem to care, I was in - heaven.
Ann Ireland

Congenital Rubella Syndrome (CRS) Severely Deaf, Hypothyroidism, Pes Cavus, Crohns Disease, scoliolis, Hiatus hernia, diverticular disease, neuromuscular disorder (?parkinsons) movement disorder, ? another autoimmune disease.

150mcg tyroxine, 20mg pantoprazole, 10mg Cipramil, 500mg 2 3times a day Mesalazine, 3mg Entocort, 62.5 Sinemet, 30mg Tamazipam, mystatin, sudocream

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 12/27/2007 10:39 AM (GMT -6)   

Hi Ann, wow it sounds like a great christmas with your sister. I'm so happy for you. It sounds like you picked a beautiful spot too! Did the spa help your muscles at all? I was wondering if some of it might be because of the wheel chair and if you do physical thearpy. I am just shooting in the dark here because I really have no idea.

As for the burning hands and feeling hot that's sounds like lupus or some A/I disease. I feel that way alot. Some of it for me I think is from my medicines though. Also even though I had a hysterectomy even my overies I was told that we still go through some type of menapause. We are both at that age so that's alwas a possibility some of the feeling hot could be from that.

Like I said I really don't know but I will check out some google sites later and see if I find anything that might help you out.

Merry christmas to you and happy new year too. Tell your sister I said Merry christmas too. and if you ever get sick of your new furniture you can ship it to oklahoma LOL.

take care


God Bless
Lupus like symptoms, with pbc symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 12/28/2007 12:08 PM (GMT -6)   

Hi Ann,

   I'm glad to hear you had a wonderful Christmas. It sounds like an awsome place!!  The burning pain sounds like a type of Neuropathy. Hopefully, your doctor can get this figured out and treated soon so you will feel much better. Please keep us updated and take care. You are in my thoughts and prayers. Happy New Year!!!

                                                     ((Hugs)) Babs

Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

Audrey Ann
Veteran Member

Date Joined Jul 2005
Total Posts : 815
   Posted 12/28/2007 3:43 PM (GMT -6)   
So happy to hear you had such a Merry, Merry Christmas, Ann! (I love the way you "talk" (write) !)
Audrey Ann
Lupus and RA and LOTS of Medications!


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